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22.7.17

Behind the scenes, parenting with M.E.

This post was originally going to be called 'Tree climbing and skirt swishing'. I don't like to talk about my ME/illness too much, the reality is very ugly, horrible and difficult, I definitely don't think it belongs in the

dreamy, picture perfect world of social media. I can't imagine what life with ME must be like as a single mother or for someone in a poorer country, or different era, where there is no relief and no help available.

Feeling guilty, I often brush it under the carpet or keep it behind the scenes. I thought I would do something different today, write candidly, genuinely about it, the frustrations, and how it affects both Oscar and me.

I have help in the form of a loving partner, and Sertaline, which takes away that indescribable 'ill' feeling, so for more days I am able to feel normal. I can only describe that feeling as flu but ten times worse, so ill it takes your breath away. There is a motion sickness element to it, so ill you feel like your eyes are going to fall out. It's scary because you've never felt ill like it and you don't know what's happening to you. I can't tell you how blissful normal feels when I am able to attain it and without Sertaline I would easily be bedridden.

One frustrating part is that at the worst of time, you are not recognised as being ill. Jokes such as "Go on with you", "Oh, you're so young!", "Young people today are so lazy!" are a common occurrence, even from doctors. So many times I wish there was more understanding of this out there, that it wasn't this vague, wishy washy thing in doctor's minds. For sufferer's ourselves, it feels like a whole new kind of ill you've never felt before.

I am learning to mother on my own terms, to have confidence in what I am doing. So many times I have felt guilt that I'm not always baking, exploring the beautiful countryside around us, taking photos or spotting deer with my little love. Experiences are some of the best presents I can give him. He has a little wooden window stool that I made for him and he loves to climb up and point at trucks, flowers and little visiting cats.

As Oscar grows increasingly more boisterous, I have to adapt. He is such a sweetie but now the tantrums are often and intense. Public displays are the worst because I have to use every fibre within me to control his thrashing limbs and tame his screams, at the mercy of the understandable displeasure of those around me.

The fatigue is the most disabling for me and has slowly been getting more intense since having Oscar. Most days I am trapped in an old person's body and on a few I can hardly move at all, not being able to speak nor hold things. It bewilders me that doctors think a cognitive behavioural - or talking - therapy would help, it is entirely physical, as much as breaking a limb. It ebbs and flows and talking and singing is a big trigger, so I will have to nap as soon as Mitch comes back and sometimes I put Cbeebies on for longer than I would like.

I save little bits, pieces, pockets of energy for spending time together and self care, and blogging when I can manage. I have to save my words carefully so I save them for Oscar. This is a big part of why I blog, yet I never wish to reveal that side of myself, instead hiding behind my pink cave and pinker photos. Due to the 'vague' nature of my illness, I am not a priority, not eligible for any kind of disability help. But it is all worth it for my little boy and I am so grateful for the help of my partner and my Sertaline - also the kind comments I receive.

Never feel guilty if someone is worse than you, it doesn't deem your suffering invalid. Mental illness often slides behind the spotlight when it comes to mental health, so sometimes people forget the scarring impact of disorders like Depression, Schizoprenia, Anxiety, Hypersomnia, (Nark) Epilepsy, Bipolar, so many more.

13 comments:

This is so beautifully written. I'm so sorry that you struggle with this every day, and I think it is beyond admirable how you cope. Oscar is absolutely beautiful and it sounds like you are doing an incredible job <3Hels xx

I admire you for sharing this up. We all face our own unique struggles in life. It's sad to hear that you've been in this illness and I can understand how it will be difficult for you as a mother. But I can see how you fight it. You're a strong woman. And I believe you have been a wonderful mother to Oscar.

Oh Elizabeth, I can't begin to imagine how hard this must have been to write down.. so first of all I am super proud of you for putting your situation out here and being so brave. I know what it feels like to live with mental illness so I really wish you the best, and never give up. You seem to be an amazing human being to Oscar, and he is super lucky for having such an amazing woman taking care of him and loving him. Never forget that.

You will be fine. The way you have written this post, it shows your strength. It shows that you are smart, that you still know your stuff. You will do great. Just hang in there. And these are lovely photos. Oscar is adorable.

Thank you for sharing. I admire you sharing your story and I enjoy reading about you and your family. :)

Thanks for the encouraging words at the end of the post. I have anxiety, depression and OCD and sometimes feel guilty when I feel down because otee prople are worse off thn me. But like you say, it doesn't make what you go through invalid.